Dear Dr. / Health Care Provider,

Have you heard of Charles Bonnet Syndrome (CBS)?

I am a patient / family member / caregiver / friend who lives with Charles Bonnet Syndrome.
Unfortunately, far too few doctors are aware of this condition and individuals with CBS are
being misdiagnosed and ushered down the mental health route at an astounding rate. This is not
only a waste of medical resources, but very distressing for the patient and their families.
Charles Bonnet Syndrome is a physiological condition that develops when an individual
develops low vision or onset blindness after being sighted. CBS causes vivid, silent, visual
hallucinations with absolutely no warning. There is not an auditory or tactile component. These hallucinations can range from disturbing to terrifying. Charles Bonnet Syndrome can affect individuals of any age, ethnic background, or gender.

CBS has been given an ICD code

CBS has been given an ICD code from the World Health Organization (ICD 11-9D56) and has
been accepted as a physiological condition in its own right. It is NOT a mental health condition,
nor is it rare. The CDC estimates that there are 20 million people in the US diagnosed as legally
blind. It is estimated that 1 in every 3 of these individuals is living with CBS. To properly
diagnose and treat this condition, it is crucial that the medical community be educated about
CBS. Currently, billing codes R44.1 and H53.16.8 are being used as reimbursable codes for insurance, Medicare/Medicaid by doctors treating CBS.

Once the medical community understands and recognizes Charles Bonnet Syndrome, we can
reduce the number of misdiagnoses individuals with CBS often receive, re-evaluate those who
have been misdiagnosed, continue much-needed research, discover and administer correct and
viable treatments for those individuals coping with CBS, connect people with CBS to community
resources, and, most importantly; help these individuals to live with dignity, inclusion, and peace
of mind while enhancing and preserving their quality of life.

Please take a moment to learn more about Charles Bonnet Syndrome at Marycarmelslight.com
Charlesbonnet.com, and Esmesumbrella.com. There you can learn about CBS, coping
mechanisms, current research, and support groups. If you have any questions or would like more information, please do not hesitate to contact us
704.389.0160.

Thank you for taking the time to understand what this patient /family member /caregiver is
experiencing and being mindful that it may be Charles Bonnet Syndrome.

Respectfully,
Dr. Gary Cusick
Education & Information Specialist
Mary Carmel’s Light…..empowering people living with Charles Bonnet Syndrome.